I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.

Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.

Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.

Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)

One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!

As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.

I just found out almost two months ago that I have hypothyroidism. I feel much better since starting levothyroxine. I also started azithromycin for an elevated ASO titer and the gluten free diet around the same time…so I don’t know what is helping the most…but I am not cold all the time and I feel like I have more energy. My doc even told me it would help with the joint pain since my thyroid was so low.. my TSH was 7-something. T4 and T3 were low. You might outta check around about your test…seems like if its even a little elevated you need on replacement therapy…but I’m no doc…just what I’ve read.

Actually no, I don’t think so … the ones saying ‘If your TSH is above 2 you need treatment’ are the internet snake-oil salesmen … sorry, I mean purveyors of natural hormonal therapies for hypothyroidism. I will have to look into the iodine-rich foods possibility – closest I usually get to sea food is ‘seaweed’ from the Chinese restaurant, which doesn’t even come from the sea!

Glad the levothyroxine is doing its job for you … if that’s what it is, and not the other bits – but regardless, glad you’re feeling better! If my TSH is still elevated next month I’ll start jumping up and down (not that I’d have the energy!) and demanding treatment, but it does seem fairly logical to me to wait, especially as TSH is known to fluctuate and my T3/T4 wasn’t terribly low. (The low-ish end of normal, but not madly low.)

In a way, I almost hope it IS your thyroid making you chill/sweat and feel so wiped out. At least there are good meds for the condition that do tend to work pretty well for people.

If it’s NOT, then maybe your rheumatologist needs to think about making some med changes in that direction. I’m so sorry you’re feeling so bad. It’s just plain no fun to hurt, sweat, and freeze while trying to drag oneself through the day.

My thoughts are will you. I hope you’ll be feeling a whole lot better very soon.

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A bit about me

My name is not Pollyanna and I'm not a penguin. If you'd not worked out the last bit you should probably stop reading this and seek out a psychologist.

This is a blog about me and rheumatoid arthritis - sounds like fun, huh? Well I'm hoping it'll be a bit more fun than it sounds - hence the Pollyanna part. I'm going to try to stay positive about it and play 'Pollyanna's glad game' - finding reasons to be cheerful basically.

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